IL-2: My Experience With The Cancer Treatment

When I was first referred to a professor at The Christie Hospital in Manchester and told about a treatment called IL-2, I didn’t really want to know much more. There could be loads of pieces like this already over the internet, laying out what it’s like to have IL-2, but ignorance was bliss. I didn’t want to know what I was getting into.

But now I’ve experienced it I thought it would be worth jotting down what’s happened so far. If it helps one person prepare for it then I guess it’s worth it.

Only two hospitals in the UK administer cancer treatment Interleukin-2 and it’s not too hard to see why. It’s seriously expensive for a start, but it’s also quite new and very intense.

It’s certainly not something I’d have handpicked if offered a selection – but after surgeons turned me down for further operations I had little choice. Kidney cancer had spread to my lung and lymph nodes near my trachea and, by the time I started treatment, my neck too.

IL-2 had been mentioned in the previous year, but I went for the surgical option after my consultant added: “You don’t want to think about that yet. It’s a toxic treatment and it kills people.”

Not a very good first impression, then. But from what I have seen, only a handful of professionals who have seen the treatment first hand know anything about it. It’s even being trialled for other cancers in the US. Maybe it’s the treatment of the future?

However, promising results come at a price, and IL-2 does have severe side effects. Doctors had listed them all to me and it took ages – like there wasn’t a side effect they hadn’t included! Of course, what I later realised is that you don’t get them all. But knowing they’re possible is a scary prospect.

I was told I’d be monitored every hour for five days during the treatment, with IL-2 doses injected every eight hours or, more likely, when my body could handle it. After five days I would have a small break before repeating the process, and then an eight-week break to fully recover. Five or six cycles of this meant a whole year of my life would be taken up.

I went into my first inpatient appointment ten days before Christmas, which wasn’t ideal timing. I was anxious but I wanted to get on with it and see what the fuss was about. First, I had a picc line inserted above my elbow and a quick chest x-ray to make sure it was fitted correctly.

I had to wait until 7pm for a bed to become available, and it wasn’t until 2pm the next day that I got my first IL-2 shot, as they thought I might have a small infection. By that point, my picc line was now joined up to a pump and drip, and I was having huge bags of fluids pumped into me to get ready for the IL-2 onslaught.

The pump was pretty annoying to lug around, and on one occasion I stood on my wire when getting out of bed which pulled on the line in my arm, but it became something I got used to. Wheeling it to the loo and back became part of daily life.

Arriving at The Christie for my first bout of IL-2

The first IL-2 dose didn’t look scary. A small bag filled with clear liquid was hooked up to my pump and I felt nothing for the 15 minutes it was being infused. After a few hours I could feel myself getting ill but it was nothing major – a sped up version of what you feel when you’re coming down with something. However, I soon felt the drug take hold when my body started to rigour – shake uncontrollably – from neck to toe.

Apparently, when IL-2 first started nurses were told to just let patients shake because it would eventually pass – and it did, eight hours later. So doctors came up with the idea of using Pethidine – a narcotic used in pregnancy – to stop the rigour in its tracks.

I loved Pethidine. It was the best part of my day. By the end I would be gagging for the rigour to come on so I get my shot. Slowly I felt my body relaxing, and my family commented on how amazing it was to see me go from shivering wreck to relaxed, drowsy and happy man in a matter of seconds.

As the treatment wore on I needed higher and higher doses, and by the end I would get intravenous paracetamol simultaneously to stop the rigour, but the feeling of sleepiness after the injection was always nice.

However, the nice feeling would eventually wear off, and I would wake up with a temperature that wouldn’t fall below 38.5 for hours. At times it would get above 40 but it wasn’t that bad for the first few doses – just like the dreaded manflu. It was when I got to about five doses that the side effects really started to kick in.

Strangely, they were completely different in the first and second weeks. In the first, I developed diarrhoea after about six doses. It was definitely the worst thing to deal with but amazingly it didn’t return in the second week, which shows how different each week can be.

Instead, the worst problem became pain and discomfort associated with extra weight gain. I had put on around eight kilograms in a week thanks to all the fluids they were pumping into me. Chest pain meant I couldn’t lie on my left side, back pain meant I couldn’t lie on my back and when I lay on my right side, my swollen legs would become numb. My hands also became so painful that they were essentially useless and some nights were very difficult, even if it never became too much to handle thanks to the fantastic care I received from The Christie’s amazing nurses.

And strangely, I started to feel better just hours after receiving my final dose. I still had side effects but they too got better quite quickly. Sleep deprivation remained, but that soon turned into drowsiness and after finding I couldn’t sleep for a couple of nights after getting home, I couldn’t stay awake!

It was awesome to get home in time for Christmas – even if I did get a few dodgy presents like this jumper!

I started the first week on December 17. By Christmas Day I felt good, and apart from a nap mid-afternoon, I was with it the whole time. The second week I needed a bit more recovery time, but again I could feel myself getting better day-by-day. I managed seven doses in the first week – mainly because I wanted to get home for Christmas – and nine in the second.

The extra doses in the second week can be explained by a boost I received from the nurses. They informed me that if I were to complete a cycle of IL-2, I’d be the youngest person to do so – in Manchester at least. Knowing that – and knowing not everyone can have the treatment – made me push on to the finish. Not only that, but I was told it cost £36,000 a week just to administer the treatment. It made me feel good that my consultant thought I was worthy. God Bless the NHS.

Maybe the best thing to say is that I don’t look back on the treatment thinking I can’t do it again. I have no idea if it will work but I know that I can do it again if required. So it can’t have been that bad!

As inspirational jockey AP McCoy said recently – the things worth having don’t come easy. IL-2 is definitely in that category.

*UPDATE – Since my stint on IL-2 I’ve been put on a similar immunotherapy drug – albeit less intense – called Nivolumab. Check out the Treatment section of this website for more on how it works.